Caring for patients

Caregivers are key to transplant success

An organ transplant is major surgery and caregivers play a crucial role in providing both physical as well as mental support before, during, and after transplantation. To help ensure that patients have successful transplant surgery outcomes, it’s important for organ recipients and living donors to have caregivers to provide quality care and support throughout the organ transplant process.

Below are tips for those who are caring for organ transplant patients.

Stay organized

In order to set up your friend or family member for success, it’s important to get organized with an organ transplant care checklist. In help preparing this care plan, you will want to have conversations with your loved one’s transplant team. This list will help you to keep track of appointments, a schedule for medications, diet, and exercise.

Communicate

Communication is the key to any good caregiver relationship. You will want to ask your friend or family member how they are feeling while also being sure to have continuous conversations with your loved one’s transplant team. Remember conversations with the transplant team should be a dialogue. Be sure to also share with them how your friend or family member has been doing so they can be sure to provide the best care.

Track progress

At times, your friend or family member may feel like the road to recovery is long. It’s important to track your loved one’s progress for important milestones as well as test results to help keep them motivated. You will want to consult with the transplant team on mapping out these key milestones.

Keep a schedule

In-line with tracking progress and staying organized, you will want to consider keeping a schedule as well. Using a paper or digital calendar will help you and your loved one to keep track of appointments, goals, and milestones.

Prevent infection

It is important to follow your transplant team’s instructions for preventing infection which may include:

Making sure your loved ones stay away from anyone who is sick, including yourself

Being cautious and hygienic around pets

Thoroughly washing your hands consistently with soap and water

Using disposal paper towels instead of reusing wash cloths

Additional specific guidance as instructed by your transplant care team

Provide transportation

After an organ transplant, it may be difficult for your loved one to do tasks they may or may not have been able to do before, including driving. Offer to drive or arrange transportation to and from necessary appointments for your friend or family member.

Stay positive

There will be times where your loved one may feel discouraged during the organ transplantation prep, surgery, and recovery process. Providing encouragement could help your family member or friend to stay strong and persist through challenges. Take small steps to help them to progress and recover.

Remain patient

During the organ transplant journey, your loved one may experience mood swings or outbursts during moments of frustration, stress, or sadness. In addition, this behavior could simply be a reaction to certain medications. Try to remain calm, patient, and understanding through difficult moments and consult a professional if these emotional outbursts become violent or don’t improve over time.

Rest and recover

In order to best care for others, it’s important that you care for yourself. Be sure to get adequate rest, nutrition, and exercise in order to be at your best physically and mentally to provide the best care to your loved one.

Caregiver resources

There are also a number of support resources for caregivers that may be helpful.

Caregiver

https://caregiver.com/
Caregiver Media Group provides information, support, and guidance for family and professional caregivers. Founded in 1995, they produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, caregiving books, and custom publications.

National Alliance for Caregiving

http://www.caregiving.org/
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.

The Gift of Life Family House: Caregiver Lifeline Program

http://www.giftoflifefamilyhouse.org/resources/caregiverlifeline/
The Gift of Life Family House Caregiver Lifeline Program provides services specifically tailored to the needs of organ transplant patients, family members, and caregivers. Their programs integrate in-person, email-based, phone, online support services, educational resources, and community-based outreach activities in the Gift of Life service area.

Healthcare Hospitality Network

http://www.hhnetwork.org/
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. The mission of HHN is to support homes that help and heal to be more effective in their service to patients and families.

National Kidney Foundation (Care Partner Resources)

https://www.kidney.org/patients/pfc/carepartner
The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention, and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. The NFF provides a range of care partner resources that will assist caregivers in identifying services that he/she may need to meet the challenges and rewards of their special role.

Did you know?

Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.